Going to try alternating... Opinions wanted

[stjohnh]

Hi, I've been on meds approximately two years, and after a year or so on mirapex augmented, at fairly low dose. I was able to transition back to neupro patches without too much trouble. I've since read a lot about treatment options and I was thinking that it seemed logical to me that alternating made good sense. Ann (ViewsAskew) said a while ago:
"I think most of us could easily try from 1 week to 2-3 months of a DA, followed by a break with either an opioid or an alpha 2 delta drug, such as gabapentin. We'd likely never augment if we did."

Logic I'm thinking about is that I don't want to augment again, and the best way ( other than not using a dopamine agonist at all) would be to keep my dopamine receptors sensitive. It seems like the best way of doing that is to use as low a dose of a long-acting dopamine agonist as possible and then additionally stop the dopamine agonist periodically to resensitize my dopamine receptors. I've now been off dopamine agonist for 8 days and was thinking of using the neupro patches for 3 weeks of the month and Kratom for one week out of the month. I may add Gabapentin to both of those as it seems as though I wake up around 1 a.m. and can't go back to sleep without the Gabapentin.

I haven't actually been able to find reports from too many people on The Forum that actually do alternate medications so I'm not sure how many people are doing that. It seems very logical to me, however. I also haven't found any literature from any of the experts discussing alternating of medications.

[Polar Bear]

Well done that you have been without a DA for 8 days It may take a few days more for it to be completely out of your system.

If I was DA free I would certainly consider alternating.

[Rustsmith]

Holland, I came across this article this afternoon while searching Google Scholar. It appears in this month's edition of the European Jrnl of Neurology.

http://onlinelibrary.wiley.com/doi/10.1111/ene.12910/abstract

It is short, but talks about alternating between low doses of DAs as a way to avoid augmentation. If you cannot get access to a copy, let me know by PM and I will see what I can do for you.

[Stainless]

I too hope to try alternating before I augment. I have been on 1 mg. ropinirole for about six weeks and just started 400 mg. gabapentin a week ago. I hope after seeing my doctor in a few weeks I can slowly increase the gabapentin to a level it can take over, if not completely as a break. I'm running out of options.

I would like to go with a longer acting DA like mirapex but it gave me a screaming headache last time I tried. Has anyone got past a headache? Mirapex has a lot longer survival per the mayo clinic history graph.

Good Luck and please let the community know how you do.

[stjohnh]

....
I would like to go with a longer acting DA like mirapex but it gave me a screaming headache last time I tried. Has anyone got past a headache?...

Stainless, headache is one of the most common side effects of all of the dopamine agonists. I had headaches with requip, mirapex and with the neupro patches. If you want to try mirapex again I would suggest starting at a lower dose than what you started at previously. Neupro patches are the longest acting dopamine Agonist. Neupro typically has fewer side effects, however rashes are extremely common and a lot of people have to stop due to rashes. The other problem with neupro is that it is quite expensive.

Starting at a very low dose and increasing the dose rate gradually will usually avoid most of the side effect problems.

[stjohnh]

Holland, I came across this article this afternoon while searching Google Scholar. It appears in this month's edition of the European Jrnl of Neurology.

http://onlinelibrary.wiley.com/doi/10.1111/ene.12910/abstract

It is short, but talks about alternating between low doses of DAs as a way to avoid augmentation. If you cannot get access to a copy, let me know by PM and I will see what I can do for you.

Steve,
This is a really revolutionary article.
The authors (German) report on 3 patients with severe rls that they maintained for several years by switching among the three DA's, including the one the patient first augmented on. They said patients did very well. This is the opposite of what many rls experts recommend. If their results can be generalized to the general rls population, it means a possible end to the fear most have, that they will eventually end up on narcotics with all the hassles and side effects attendent.

Before getting up too much hope, this was only three patients and the authors didn't comment if this was three out of three tried on cycling DA's, or perhaps they tried 10 or 100 and only three had good results.

[Rustsmith]

I read the full article as well and picked up that it was only for three patients. Another point that I noticed was that they were recommending the ER versions of several of the DAs that they tried, but did not mention Neupro.

FYI, I am an adjunct faculty member of a large university and have access to a number of the medical journals. Sometimes I have to wait for 6 months to get access, but I get to read thing that are not widely available.

[ViewsAskew]

Long, long ago, a woman who was a member of a different RLS message board used to alternate between pramipexole and ropinerole. When one stopped being as effective, her doc had her switch to the other. Then back, and so on. She did this for years. The doc was in Florida - Elahy? Elaty? Can't remember for sure. That board doesn't exist any longer, so no idea if she still does this.

That said, once I augmented, I was unable to do this, as have been many of us. My doctor had me try both Sinemet and ropinerole. Both times, the RLS went into hyperdrive - after sinemet, I had about 36 hours of some of the worst RLS I've ever had. Ropinerole wasn't as bad, but it definitely did not help.

Maybe there is some point before which you have to switch.

[Yankiwi]

I had quite a few crying nights with Sinemet. It works great for occasional use but not continuous.

[stjohnh]

I read the full article as well and picked up that it was only for three patients. Another point that I noticed was that they were recommending the ER versions of several of the DAs that they tried, but did not mention Neupro....

The meds they used were rotigotine (Neupro patch), ropinerole ER (Requip XL), and pramipexole ER (Mirapex ER).

When I switched from pramipexole (that had been causing augmentation) to Neupro patch, I was surprised at how easy it was. Stopping the Neupro patch and using kratom instead was quite difficult however. I think I will start a new thread for discussion of DA cycling. Would it be better in the Prescription topic or Augmentation?

[QyX]

When I tried DAs, I was tolerating pramipexole for about 2 weeks and when I tried ropinirole, I was not even tolerating one tablet.

One month after the RLS diagnose I was treated with narcotics. Back then I was coming off of a high benzo dose, took all kind of drugs for my sleeping problems who did not help anything at all. So my doc had no choice and put me on opiods. Back then I was only 27 years old.

Some of us simply have no choice.

[stjohnh]

When I tried DAs, I was tolerating pramipexole for about 2 weeks and when I tried ropinirole, I was not even tolerating one tablet.

One month after the RLS diagnose I was treated with narcotics. Back then I was coming off of a high benzo dose, took all kind of drugs for my sleeping problems who did not help anything at all. So my doc had no choice and put me on opiods. Back then I was only 27 years old.

Some of us simply have no choice.

Sounds like RLS is really been miserable for you. What other medicines do you take now besides the opiate? Or is the narcotic enough to completely control jumping legs and sleeping problems ?

[QyX]

An opioid was never enough. The morphine I take deals with about 40-60% of the symptoms. For the other part I am taking Carbamazepine. It is on of the oldest antiepileptics on the market and the only one who improves my RLS with acceptable side effects.

I tried Lyrica / Pregabalin (5 times!) and Horizon / Gabapentine but both drugs had either too much side effects or weren't working at all. For example the Lyrica made me anxious and depressive.

In total I tried 51 drugs (no joke).

The problem is that I was mistreated for many years and in all this years I took drugs who were worsening my RLS. Most of the time I took antipsychotics like Seroquel as a sleep aid and Lithium for depression. At the age of 19 I was misdiagnosed with bipolar disorder and it took 8 years until this mistake was corrected.

My guess is that because of the Seroquel and Lithium my RLS is already that worse at such a young age. I also took drugs like Zyprexa (18 months), Abilify, (horrible drug), Haloperidol (very high potent antipsychotic), various SSRi like Escitalopram, cholinerg drugs like Biperiden, all kinds of Benzos, especially Clonazepam, stimulants, Trevilor and at some point I even took Clozapin, this antipsychotic were you have to make blood tests every week because of potential lethal side effects. My brain was really messed up and when I came down from this mess ... I did not really tolerate the DAs.

They just made everything worse. I was experimenting a lot with them. Later I was using a 2nd low potent opioid (Tramadol) together with Oxycodon. In this combination I was tolerating the Pramipexole for about 8 weeks but after that, they never ever worked for me. And Ropinirole, that's just the devil for me and was from the first tablet.

[stjohnh]

Wow what a story. I'm really sorry you've had such misery. I've had RLS for over 30 years, however it is only been bad enough to require medications for the past three. The basic problem of best medicine versus side effects is really big for this disease. A lot of people don't realize that chronic narcotic use in many cases doesn't cause many problems ( assuming you have access to a stable legal supply) and that addiction problems are among the least of them assuming you are going to be taking medicine for the rest of your life anyway.

I'm a retired MD so correct diagnosis was never a problem and my treatment has so far been pretty much self-directed. My personal doctor is generally pretty cooperative about prescribing what I want to try, however I have not yet gone to opiates, and that may be a much more difficult to get her to agree on.

[QyX]

But there is so much real scientific evidence now available that opioids are a safe, secure and working treatment option for RLS.

Please have a look at: https://www.ncbi.nlm.nih.gov/pubmed/24140442 ... I can provide you with the full text if you don't have access by yourself.

Also, you don't have to use a potent opioid like Oxycodone, Morphine or Methadon at the beginnging.

Opioids like Dihydrocodeine or the opiate Codeine are much easier to get and work, too.

If it would have been up to me back then, I would have asked for Codeine but my Neurologist put me on Tramadol for 3 days and after it was clear that I was only getting relief for about 8 hours at max daily dose he instantly put me on Oxycodone. Oh he was scared because I was his only RLS patient on Oxycodone and normally only his cancer pain patients got prescriptions for Oxycodone.

So it was a big big step for him to write such a young "boy" a prescription for Oxycodone.

But I was just so ill. I wasn't able to see the doctor by myself back then. The life partner of my mother had to drive me. Sometimes 3 times a week. Because of all this crazy med changes, Benzo withdraws and sleeplessness I had lost about 10 kg of weight. We simply had every option exceeded. There was nothing more left to try.

A few months later I was hospitalized for RLS. I was in the clinic of Prof. Trenkwalder in Kassel (Germany). She told me to stay the hell away from DAs and go with the Opioids for the rest of my life.

It took some time until I was able to function again. I write about all the details in my pharma diary which you can read here on the board.

At the end opioids (and Carbamazepine) really have been a life changer. I was able to continue Med School. Without opioids I had no life. There was just suffering and pain and nothing else.